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I'm blogging for awareness for chronic illness and those who live with it on a daily basis. I'm hoping to bring awareness for myself and to educate others with illness or loved ones of someone who is ill.

EDS Blog Challenge Day 4 My Advice for the Newly Diagnosed

First of all Happy Star Wars Day, May the 4th be
with you. J

There’s a whole list of things I want them to know, it’s
nearly never-ending, but I’m only going to list a few. There’s so many things
that often times people are prepared for, I certainly know I wasn’t really
prepared regardless of seeing all these doctors.

1.Don’t give up until you get answers to all your
symptoms no matter how tempting it is to just give up. I don’t know how many
times I thought about giving up, probably hundreds. You’re experiencing your
symptoms for a reason don’t forget that it’s a long process of trial and error.

2.Do your research; don’t go into a appointment
unprepared. Don’t let the doctors blindside you with things as they often times
do. You are your best advocate, only you know how you feel. Having a vague idea
of what might happen to you at an appointment is better than having no idea at
all.

3.Challenge your doctors, if you’ve seen a doctor
for years and years like I have eventually they’re going to know you more
personally. When you have that comfortable relationship is a good thing. They’re
going to know that you do your research and are taking an active role in your
treatment plan and care. They don’t have all the answers sometimes you need to
make suggestions and encourage them to think outside the box.

4.Just because you have the ability to bend your
body in strange ways don’t do it for fun. Or at least keep it to a minimum or
you’re going to destroy your joints and be in even more pain.

5.Figure out what helps any joint/general pain you
may have. Be it a bath or lotion or whatever tickles your fancy. And then you’re
going to want to stock up on it, like large bags of Epsom salts. Prepare for
highs and lows in your pain because it’s going to happen eventually. And figure
out what triggers your pain so you can learn to avoid it at all costs

Hi everyone, I'm Kali. I know there are many people out there with illnesses exactly like mine and they might be looking for answers or a little insight and I want to try to help them. I know when I was looking for people out there with similar illnesses it was hard to do. Mainly because a lot of people with chronic illnesses like to just keep to themselves. But I feel like if I put myself out there that's one more person that's a little more educated and understanding.